My partner and I had just finished packing our belongings and were standing by the hospital bed, intertwined fingers, when the pediatrician walked in after conducting the discharge exam. She entered the room without our newborn daughter in her arms, her serious demeanor instantly triggering a wave of anxiety within me. I tightened my grip on my partner’s hand and prepared for what I feared were ominous words.
“Your daughter had a seizure during our examination. We need to admit her to the Neonatal Intensive Care Unit,” she informed us.
We froze in shock, unable to find our voices. My mind was racing, my heart pounding in my chest; this was unreal. We had already dressed our daughter in her special outfit for the journey home, ready to embark on our new life as parents. The excitement had been palpable, and now it felt like a nightmare.
The doctor continued, “I apologize for the sudden change. We’re running numerous tests to determine the cause. Have you noticed anything unusual?”
I reflected on the past few days. Our daughter had indeed made an alarming entrance into the world. Born at thirty-six weeks with the umbilical cord wrapped around her neck and without any respiratory effort, she had been swiftly resuscitated by doctors in a chaotic delivery room. After that initial trauma, she had seemed to be doing well—eating, sleeping, and gaining weight. But then I recalled, “Yesterday, I noticed her arm jerking. I mentioned it to the nurse, and she said it was nothing.”
“Hmm…” the doctor pondered. “That could have been another seizure, and it’s crucial we determine why she’s experiencing these episodes. I’ll head back to your daughter now, and someone will be with you shortly to discuss the next steps.”
Instead of bringing our baby home, my partner and I spent that afternoon adjusting to the rigorous NICU protocols. We trailed after her as doctors and technicians performed a battery of tests, including MRIs and CT scans, waiting anxiously behind closed doors and peering through Plexiglas windows.
The reality of our situation began to set in. Our newborn was having repeated seizures, and no one could explain why. What would happen to her? Would she be okay? We tried to suppress any speculation about the outcomes of the tests, clinging to each other and offering silent prayers.
With the overnight facility full, we were forced to leave the hospital in search of rest. Departing without our daughter felt surreal—I left my heart in that NICU.
We were unable to go home; we needed to remain close. So we found a hotel nearby, enveloped in a loneliness and despair we hadn’t anticipated. I curled up in the hotel bed, a cold heaviness settling in my chest, my trembling hands instinctively clutching my stomach. My baby was no longer inside me, nor in my arms.
Eventually, the doctors concluded that our daughter had experienced a stroke, either before birth or shortly after. This revelation could potentially explain her premature arrival and was certainly linked to the seizures. However, the cause of the stroke was still a mystery, necessitating further testing. Our daughter needed to stay in the NICU, and we couldn’t bring her home.
The following day, as I sat in the NICU, I surveyed the array of medical equipment: warming beds, feeding tubes, IVs, and monitors. Tears filled my eyes as I looked at the other babies, and I was overwhelmed with two conflicting emotions:
Fear
Our daughter had suffered a stroke, and the unknown loomed large. What would the long-term effects be? Although we didn’t know much about pediatric strokes, we knew they could be serious. The doctors were conducting EKGs, blood tests, and administering phototherapy and antibiotics. This was far from the joyous homecoming I had envisioned.
Guilt
Despite her condition, my baby appeared healthier than the other infants in the room, who were smaller and more dependent on medical apparatus. How long would they remain in the NICU? What challenges did their families face? What would their eventual homecomings look like—or would they have them at all?
These emotions fueled us as we returned to our hotel for brief naps and showers before heading back to the hospital every three hours to nurse and hold our baby. This wasn’t your typical new parent exhaustion; we had to drive in silence through the night, grappling with the unknown while hoping for a positive outcome.
Those were three of the most harrowing days we had ever experienced.
On the third day, we received encouraging news: our daughter was stable. There had been no new symptoms or seizures, and the doctors had ruled out the most severe causes of the stroke, believing it to be due to a blood clot. Only time and ongoing care would reveal the long-term effects. As the attending neonatologist recommended discharge, we felt a wave of relief wash over us, and the weight of fear and guilt began to lift.
It was a bright, sunny morning when we finally placed our daughter in her car seat and prepared to leave the hospital. The click of the seatbelt brought a surge of relief and joy. We had navigated our first major parenting challenge and emerged victorious. Although our future remained uncertain, we were finally taking our baby home. We were becoming a family, and in that moment, we knew everything would be alright.
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In summary, the journey through the NICU was fraught with fear and guilt but also filled with moments of hope and eventual triumph. Our experience underscored the unpredictability of parenthood and the resilience of love.